On Thursday, July 28, the U.S. House of Representatives introduced the first-ever legislation solely devoted to ending Parkinson’s disease and atypical parkinsonism’s, including multiple system atrophy. This is a historic moment for our community!
The National Plan to End Parkinson’s Act will, for the first time, unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and ensure those living with the disease have access to the care they need.
This bipartisan legislation is led by Representative Paul Tonko (D-NY) and Representative Gus Bilirakis (R-FL). The Michael J. Fox Foundation (MJFF) and Parkinson’s community are thankful for their leadership.
This bill will go through the traditional congressional process and will need to be voted on by the House. Soon, The MSA Coalition will be providing support and templates to email your elected officials and encourage them to support this important piece of legislation.
The Michael J. Fox Foundation is working with two Senators to introduce the Senate’s companion bill in the coming weeks, because it is standard congressional procedure for both chambers of Congress to pass the bill before it can go to the President for signature.
Why a national plan and why now?
Parkinson’s (including atypical Parkinsonism’s) are diseases that require a national effort to cure and prevent. A national plan to end Parkinson’s has the potential to:
- Dramatically increase federal research funding;
- Develop more effective pathways for treatments and cures;
- Improve early diagnosis;
- Spark new and improved models for patient care;
- Create standards and measures to prevent Parkinson’s disease;
- Address health disparities in diagnosis, treatment and clinical trial participation; and
- Enhance public awareness of the disease.
The public-private advisory council created as part of this legislation will report every year to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.
We will update this blog as the legislation advances through Congress, so stay tuned!
How will The MSA Coalition support this bill?
The MSA Coalition is a member of the Unified Parkinson’s Advocacy Council (UPAC). Comprised of representatives from state, regional and national Parkinson’s organizations, the UPAC works with community members to gather information on the priorities of people with Parkinson’s and their families, helping to ensure the needs of the broader Parkinson’s population are represented in MJFF’s public policy efforts.
The MSA Coalition will be working closely with UPAC and the Michael J. Fox Foundation to advocate, educate, and increase awareness of this important legislation to elected officials. We will be providing additional resources to equip our community with easy-to-use templates and tools to communicate with members of Congress soon!
If you have any questions, please contact Joe Lindahl, MSA Coalition Executive Director, at firstname.lastname@example.org.